Three-Year-Old Ben Fought for His Life and Won

Posted February 21st, 2013 by Be The Match and filed in Patient Stories
Show Content

It all started in January 2011. Ben, then three-years-old began to experience severe bruising, and a trip to the doctor found that he had low platelet counts. Ben was diagnosed with a disease called congenital amegakaryocytic thrombocytopenia (CAMT), a rare inherited bone marrow failure disease in young children where the bone marrow no longer produces platelets or megakaryocytes, meaning that if the child begins bleeding—his or her blood will not be able to clot. Ben’s parents, Katy and Todd quickly discovered that his best chance at survival would be a marrow transplant. They worked with their transplant physician to find their donor who was listed on the Be The Match Registry®.

The search for a match

After just two months, the search for a matching donor was amazingly successful. “Our doctor found five perfect, unrelated matches through the Be The Match Registry.” In June 2011, Ben received his transplant at Children’s Hospital in St. Louis, Missouri. While the pre-transplant conditioning was described by his mother, Katy as “very grueling, but manageable” the actual transplant was “beautiful, Ben slept through the entire process.”

The first 100 days

The first 100 days after transplant are critical – recipients are at risk for various complications, such as infection, graft-versus-host disease (GVHD)and even graft failure or rejection. Thankfully for Ben, while he experienced some minor infections and a few rashes, he never developed GVHD. The first 100 days were “Difficult and intense because we followed the regulations and doctor’s advice exactly,” said Ben’s mom, Katy, “but we had excellent family support and a good sense of humor and optimism.”

Adjustment to “normal” life

When Ben returned to school, he had some difficulty adjusting to school life and socializing with the other children, “because of what he went through.” But now, Ben is an outgoing, determined and intelligent boy who enjoys school and his new friends.

Today, life is back to normal for Ben and his family. “I love watching my son enjoy his life and get to do all the normal things five-year-olds do,” said Ben’s mom, Katy.

Ben’s donor

And as for Ben’s donor? “We exchange emails and are friends on Facebook. Though we live so far apart, it was amazing to learn his in-laws live only 45 miles away from us!” said Ben’s mom, Katy. Ben’s family hopes to one day meet his donor in person to say “thank you.”

Learn more about the transplant process  >


Editor’s Note: A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.

7 Responses to “Three-Year-Old Ben Fought for His Life and Won”

  1. Megan Hoelscher says:

    I’m Ben’s aunt, and I can’t tell you how much seeing his story on your website means to me and my family. He is such an inspiration and he fought hard every day and his now doing so well. Without your foundation, we would have been lost as how to help Ben. I am doing my best to promote your organization and encourage everyone who is interested in donation to check out your site. Thanks for all you do.

  2. Shastine says:

    Yay!! Thanks for the great success story. All the best to Ben and his family and many thanks to the donor and his support system!!

  3. Monica says:

    I’m so glad he has a second chance! This story touched me and I hope the best for him! Best regards to the donor!! You saved a life!!

  4. Eric says:

    What a wonderful story, and what a wonderful young man. What a blessing he is, and what a miracle his story is. Thank you for sharing it with us! (And yes…I’m a registered donor with Be The Match!)

  5. Debora says:

    I’m a grandparent and have been on the donor registry for years. I’m so very thankful there is an every widening data base to help so many. There is nothing that wrenches your heart more that a sick child. Thank God for Ben and the help he recieved!!!

  6. Denise says:

    This story is an amazing. I’m so happy to hear that he is doing good and be able to have 2nd chance of life. It is such a blessing to a fine young boy and to the family. To the donor, you have saved this boy’s life. May god bless you and all the family. I’m also registered Be the match. I was once almost the perfect match for 1 of the patient but they found someone else who was a 100% match than me. I was really anxious when I received an email telling me that I may be the match. I truly want to save someone’s life. It’s a blessing to be able to do that. God bless!

  7. Stephanie says:

    What an inspiring story, which was much needed in our families lives. My father was diagnosed with AML a year ago. We too were blessed to find an unrelated donor through Be The Match! He’s scheduled for admission on Friday. Best of luck to Ben! We are so grateful for our donor and hope we get to thank them like your family did!!

Leave a Reply